Hello Again!

 Well, hello! 

I bet most of you thought that maybe I'd given up blogging. I'd only made a few posts this year and haven't done so in something like four months, so I would see how people would think that.

Truth is, I have thought  about giving up blogging, due to a few different factors. One being that it doesn't seem to be very popular anymore, so when I do put in the effort to publish something it's often not read by very many people. The second reason is what I mostly wanted to talk about today. Chronic Illness. 

When I began blogging something like 15 years ago it was about autism, mainly about my two autistic kids. They have now almost grown up and like them I have grown, as well. Seems kinda weird to talk about their lives through a blog when they're 18 and 16. It's an invasion of their privacy as well as an unethical form of voyeurism, imo. I had thought about this awhile ago and began to scale back the amount of info I shared about them online in a public forum. Maybe I should never have been so open about their lives to begin with? I don't know. Probably not, but hindsight is 20/20. When we know better we can do better. The best any of us can do is adjust our behavior to the knowledge we continually seek, refusing to stay uninformed and ignorant about how we affect others and they affect us.

Besides, the last ten years or so I have moved to speaking out about my own autism, and how I view the world through the unique being that I am. This took up quite a  lot of the space in the blog, until I began to feel I had almost run out information to share on the topic. 

Then, I opened up the scope of focus to include introversion as well. As I aged and learned more about myself I felt that being an introvert has been a very large part of who I am,  almost as much as the autism. I felt the need to further explore what being an introvert means to me and how it has impacted my life. I wanted to connect with a wider community than just the neurodiverse,  so I changed the blog (and blog page on FB) to the current name,  replacing Inner Aspie. I'd outgrown that name, that persona in a variety of ways, so I wanted the title of my writings to reflect that. In doing so I have been very lucky to connect with many new friends that I cherish. 

Now, I am including chronic illness as a focus, or a sub-focal point (?) to the blog. This isn't entirely a new topic on here. If you've been a long time reader you probably remember some posts speaking of migraines and such. It seems that I have found out the cause of my ever growing and ever changing physical maladies that have prevented me from being able to be as active as I'd like, including things like blogging. 

I'd been to my regular physician and a neurologist these last couple of years trying to find out what is causing my symptoms and what can be done. Tests and more tests have been run. Then after a very detailed lab panel had been run and come back fine my doctor told me I have Chronic Fatigue Syndrome or Myalgic Encephalomyelitis 

I knew basically what that was, and wasn't happy to hear that diagnosis, at all. I felt my stomach sink as she told me there's not a lot that she can do  for me. I left with a printout about ME feeling a bit defeated. 

 

I'm still learning about what it is and how it applies to me. Looking back over my life now I realize that I probably have suffered from this illness on and off to varying degrees since I was 15. I'm now trying to tease apart what has been depression and what has been just flat out exhaustion and malaise, for one. There's been a lot of assumptions I've made about myself and who that I am that I have to reevaluate now. It's been a very freeing process to understand myself through this lens, letting go of shame of who I thought I was and who I admonished myself for never being. 

 

I'd love to be able to express this whole journey through writing about it here, and I plan to  as much as possible, but the amount possible is where the difficulty lies. Much of the time my head is so foggy and even thinking about putting together coherent sentences is beyond my reach. Still, it's my hope to be able to continue to blog here on the days the fog subsides and I have a tiny bit of energy to spare.  This place here is a digital representation of my soul., safe and authentic. Thanks for visiting, friend!

When Page Owners Have a Bad Day

Do you ever have those days where you're overflowing from too much pressure about one, or maybe even lots of different problems?  I think that everyone does.  I think some more than others.  I am having such a day, myself.  Not really emotional as much, as ummm... maybe.... intolerant?  I still don't think that fits what I am trying to convey.  I am having trouble finding, sorting, and communicating the words I'm meaning here.

I am pretty open about everything it seems in my life via this blog, and FB.  It would seem that my life is an open book with not a lot going on that I haven't spoken about, but like most people I have a private life that I keep .... well, private.  I don't always share my every issue, or even my every desperate struggle.  I might seem to many to be strong, and holding together, and 95% of the time, in 95% of my life I am.  Then, there's that 5% that I compartmentalize.  That is my OCD driven problems, and my private life kind of struggles (that let's face it most of us have at some point) part. This is the 5% that I hide, because it's my vulnerable area, and it's really not everyone's business. If you're a trusted friend, you already know what these are

Compassion > Judgment = True Inclusion

This morning I came across a blog post by a mother of two special needs kids about a site called Too Big. (I'm not gonna link the site, because I'm not wanting to drive traffic to it. Nor, do I care to even look at it.) The blog post is called Tides We Shouldn't Have To Swim Against .  In it the author, Julia Roberts, talks about how a site like Too Big helps spread the biased, discriminatory attitude that any of us with disabilities ourselves, or have children with disabilities/special needs face everyday.

Basically, from what I've gathered, the site is composed of pictures of kids with their faces somewhat covered that are in strollers that are beyond the typical size most kids would require one.  I already don't see how that is so funny, even if the kids don't have special needs.  What's even more, the idiots that make the site actually think it's worthwhile enough to make fun of little kids that they pay to put up a website to do it.  That's what caliber of people we're dealing with here.  I don't expect to make them understand somehow that what they're doing is not okay, and harmful.  When someone is that awful on the inside it would take much, much more than me and a few others complaining to get them to see, or care how they're affecting others.  I'm not sure that anything could get someone that is that much of a bully to change. I just hope that by saying something to others that may visit the site, or another like it at some point, we might put that little bit of knowledge in their head of the other side of what they're looking at.  That there may be more than meets the eye when you encounter something that seems out of the ordinary.  Maybe, instead of laughing and staring one ought to have a bit of compassion.  One of my favorite sayings is that 'you can't know everything about everybody.'  Meaning, that everyone has their own life, their own struggle, their own story, their own pain, their own private life and this affects how they behave and come across to others.  I find that it's best to always try to practice compassion when we encounter behavior or people we don't understand, because we can't always know the other side of the story.  It's when we look through the eyes of compassion that we can truly see the other person as they are, not who we think they are, or what attachment of ourselves we're putting onto them.  That's all our judgement is, anyway.  It's a biased belief we hold as a result of our perception of what we think we see, or don't see.

I hope that the Too Big site disappears soon due to lack of interest on the public's part.  I know that I have gotten the ugly looks when my son was younger and I still used a stroller.  It wasn't because he was unable to walk.  Much to the opposite, as he would run and was impossible to keep by my side at any given moment.  Add that to the fact that my older son was also a runner, I had to employ methods to keep them both safe.  Since, Beans was unable to even so much as acknowledge when he was being spoken to, much less follow directions, or hold my hand, I chose to use a stroller until he was about 5.  Then, I used a harness for about a year, which also garnered it's fair share of attention.  One thing I was adamant about was that I was not going to let others make me or my children feel inadequate.  I never once flinched in the adversity of stares, or kept Beans at home unless I thought he would be uncomfortable with where we were going.  He has every right to be out in public.  So, special needs parents everywhere... hold your head high and do what is best for your family even when it may not always be the most popular, or comfortable.  Inclusion means everyone.

Autism and sexuality.

Autism and Orgasm
The above blog post is one I think should be well circulated through out the whole autistic community. Parents as well as individuals on the spectrum should read it.    There is so much misinformation, or complete lack of, about sexuality and autism spectrum disorders.  Being a moderator for some forums for autistics and such I have most definitely had my fair share of private messages coming from others on the spectrum asking about sexuality and related issues.  Some are my age or older and have been in a relationship for many years, but have been unable to achieve intimacy in a sexual way with their partner. 

For many of us, we were not diagnosed until our adulthood. But, for the school aged autistics, I think there should be a separate class on sexuality that goes beyond the basics of human anatomy to help them become more knowledgeable about how their body works and other pieces of info that may not apply to the NT population.  Sensory issues, anxiety, poor nonverbal body language interpretation ect...can make intimacy with a significant other very difficult, but most definitely NOT impossible for those of us on the spectrum. Having the right knowledge could make all the difference.